Always good to read your name. Was thinking the other day how nice it would be to visit your city. Maybe after tx when I have the requiste energy. Don't know much, have read little, about ammonia levels. But if you read the post in a thread started by Pluggin Away yesterday he makes reference to ammonia levels, brain scatter (great term) and lactuose. Just a few threads down. Take care.
Sorry, that's Plugginalong's thread
I had high ammonia levels from cirrhosis. It does make your brian foggy. The thing is, its all so insidious, it happens slowly. So I didn't know how out of it I was until I started taking lactulose to reduce the ammonia. And then, surprise, I stopped taking naps, my brain was working better. Don't deny yourself the possibility of feeling better.
Increased ammonia levels are related to liver damage not the treatment drugs. Did your doctor say what the levels were? Did he put you on meds for it? Are you seeing a Heptologist?
Elevated ammonia levels in the setting of cirrhosis are the result of the reduced capacity of the liver to convert the ammonia produced by the intestinal bacteria from protein remnants in the food to urea, which is non toxic to our metabolism and can be excreted effciently in the kidneys. Ammonia ( and some other ill defined toxic byproducts of intestinal bacteria metabolism) is particular toxic to the brain and can cause , at first, mild subclinical encephalopathy as is often seen even in compensated cirrhosis using sensitive psychometric testing. At higher levels it can cause acute hepatic encephalopathy, which is one of the deadly acute complications of cirrhosis. It is treated with high dose lactulose, which has the effect to reduce the number of ammonia producing intenstinal flora in favor of lactulose ( a non absorbable harmless, nontoxic sugar, available OTC in Canada and Europe for laxative purposes) utilizing bacteria, that are harmless and do not produce ammonia. This is a life saving treatment. There is little reason not to use lactulose as a preventative probiotic treatment for anyone with liver problems.
HR, it sounds to me like your comments are once again spot on. I have 'early cirrhosis' and I've noticed that I'm rarely running on all mental cylinders. Not bad, but not great. Like a missfiring Volkswagan when I'm used to functioning like a smoke belching Rambler...
I have a brand new shiny lactulose script waiting to be picked up at Long's.
My Doc and I discussed the issue and settled on trying this just to see what will happen. We talked about the sensitive tests required for minimal encephalopathy and how individuals who's professions or lifestyles require more concentration might sense the problem earlier. I haven't figured out how the tests would work without a baseline....seems to me mental function is relative, no?
He didn't offer to test amonia, which strikes me as odd.
As far as the downside, the Doc was reluctant due to the potential disruption to the bowels. He says theraputic benefit woun't be realized until I titrate up in dose to reach 2 movements a day. I wished we had started dooner - it would have provided me something to talk about at the holiday parties. Fire in the hole......
Seriously though, he leaves it to me to decide how much I want to take and I think I'll lean to the low side so as not to have too many pooper problems. I wonder whether I can benefit without being tethered too closely to the can?
Dont be afraid of the lactulose.Its harmless, quite incredible how much good it can do with being so totally nontoxic. Just titer it in, you will find "your" dose.
Thanks! So it sounds like I can get some benefit (and maybe even improved mental clarity) from a dose that won't have me plotting out gas stations with no-pay toilets?
i guess it all 'DEPENDS' on how badly you want the mental clarity...leastwise your choice of reading material while attending the porcelin throne may well titer up.just imagine,you could start reading the newyorker instead of marvel comics or counting the tiles....GOODLUCK & keep us posted on improvemnts,please
Wow what excellent points! So the theraputic benefits of the lactulose may be more a function of the reading material you keep by the commode as you poop your way to higher conciousness? You have shined a light(beam) where the light rarely shines, my friend!
i found out about that nasty thing called ammonia when iwas answering questions in a deposition and all my answers were strange. after bloodwork, i found my level to be120. did some new med for 3 wks and it had gone up to 200. got on lactulose and it dropped to 120 in 2wks. it is in powder form to mix with water and does not taste bad at all. my dr took me off of it but said if i am confused again to start it up. encephalopathy is a new twist in my issues. i am basically stage 4 decompensating and have had 2 bandings in last 3 yrs. i was diagnosed in 1999 after routine bloodwork for minor surgery
trade name kristalose in packets. it is cheap at wallgreens
If you take lactulose prophylactically, then the ammonia producing bacteria will be kept at a low level and the lactulose dose to achieve this will be low, with no unpleasant degree of diarrhea. If a patient has already toxic CNS symptoms, the presribed dose of course will be high and diarrhea will be intense. Again, hepatic encephalopathy can be life threatening and then even lactulose enemas are given to save the patient.
Because of this almost miraculous effect of lactulose, it seemingly is respectfully considered a "drug" here - and by some doctors-, something to be reserved for severely ill patients.
In reality it is a harmless sugar, simply fostering a nontoxic enteric flora that lives on lactulose that we cannot absorb, reducing not just ammonia but also LPS and endotoxins reaching the liver from the gut, reducing hepatic and overall inflammation, having antifibrotic effects for that reason and preventing "bacterial translocation" that is the transport of bacteria from the gut lumen through "leaks' in the guts epithelial lining into the intstinal tissue towards local lymphnodes and the liver. It preserves the integrity of the intestinal mucosa, which further reduces the antigen induced stress on the liver, calming the Kupfer cells, which are sitting there to catch these foreign intrusions that all hit the liver first.
It is therefore, together with some probiotic bacteria, part of any reasonable probiotic/eubiotic treatment plan of the intestinal flora, with great importance to anyone with liver disease and and eye towards reducing hepatic and systemic inflammation, fibrosis progression /regression.
It is something that, in low dose, even a "healthy" person should consider as part of his/her lifestyle.
Here is a study to determine its "toxicity":
Lactulose has profound health benefits by way of increasing bifidobacterial flora in the intestine of infants thereby protecting them against enteric infection, constipation and systemic encephalopathy. In the present study to assess the sub chronic toxicity of lactulose syrup, the rats were fed on a basal feed supplemented with lactulose syrup at 0.5, 1.0, 2.0 and 5.0% for a period of 21 weeks. Monitoring of food consumption, gain in body weight and physical observations did not reveal any treatment-related toxicity in any of the group of rats. Terminal autopsy also did not reveal any signs of toxicity. Further, no significant alterations in relative organ weight, serum biochemistry and urinalysis were observed up to 1% lactulose supplementation level. The results suggest that supplementation of lactulose in the diet does not produce any toxicity at the doses tested.
my doc told me the same thing about "range levels" they are different for everyone. alcoholics can die in the 100 range .i was over 200 and other than confusion and spaciness, functioned fine. I agree about the lactulose. i did have looser stools, not diarhea but figured out when to take it based on bathroom access at work.I took in mid eves and was fine all day. I am pretty physical at work and was going 3x a day. my wife has a coworker, whose dad went wild at work, tried to beat up his boss, left after work, tried to run him over and went into a coma. he had had a tplant before this, but is better now.weird huh?
Based on my SVR and a fairly recent Fibroscan, not overly concerned with cirrhosis -- however, for the past 9 months I have had quite noticeable post treatment 'bloating' in the abdominal area that was unremarkable on ultraound. The bloating, combined with more frequent bowel movements with sometimes more than usual urgency t, leads me to believe some sort of gastric inflammation, IBS, etc.
First, does this make any sense to you in terms of treatment and
do you think lactulose might be beneficial in terms of my bloating? And second, any other suggestions/comments on the bloating, including additonal tests, next steps, etc.
I did mention it to my hep doctor but have not pursued it agressively partly due to the symptons not being severe, and partly being tired of doctors, procedures and medications :) He did ask me if I had been under stress lately -- probably guessing IBS -- and we left it at that. As to stress, nothing conscious, but I have likened many of the symptons myself and others have experienced post treatment to post traumatic stress syndrome, so in that light, I probably am under a certain level of stress coming out of a very traumatic 54 month experience.
Thanks in advance for any insights.
Forgot to mention that I was thinking of seeing a doctor of TCM both for the bloating and post tx skin issues. I imagine their rx would be herbs and acupuncture. Your comments welcome on this.
My husband's ammonia elevated to a point where he was experiencing blackouts, but in the beginning it presented as confusion and disorientation. The blackouts are what ultimately led to the HCV diagnosis. He was put on lactulose and it did wonders, rather quickly. He hated the stuff, and due to improved liver histology he no longer needs to take it, but without it, things could have gone from "worst" to worser...
Magnum, one of our doctors told us the number is irrelevant, it's how you feel and not to get too hung up on what's "in range" and what isn't.
Thanks for the input. Apparently the primary doesn't think I need treatment at this point, or he would have said so, I think?
I will have to find out the norm and then what mine is considered as high, or higher...
Although not reported for lactulose, theoretical hazard exists for patients being treated with lactulose who may undergo electrocautery procedures during proctoscopy or colonoscopy. Accumulation of hydrogen gas in presence of electrical spark may result in explosion. Therefore patients should have thorough bowel cleansing with nonfermentable solution before undergoing such procedures.
HR: Thanks a million for all this valuable info.
Jim: If you have bloating, it sure sounds like the lactolose should take care of the problem. One way or another. Don't know why I think you might have a heated toilet seat, but if you do, please have the wiring checked by a qualified professional...
are any of you on a transplant list? my husband has cirrhosis end stage from working in a chemical plant and we are told he is too far for a transplant? Is this a true possibiltiy. His platelet count is 40,000 and white count is 2 x whatever the mean is that you times it by.
add on to my previous post. the cirrhosis is actually caused by the hep c that was gotten from the chemical and waste plant
Do you think it would be wise for folks to take lactulose as a preventative measure? Does this ammonia problem occur with HepB? Can lactose intolerant people take it? Is it available in the US?
I am so greatful to have found this forum. I was diagnosed with chronic HepB one year ago nd the doctor I saw- which was a gastro, but NOT an Hep B specialist told me i could continue to drink socially because of my low viral load and normal function tests. I switched insurance and had to switch doctors and found a tru specialist this year. The new doctor is a godsend! She says I likely contracted at birth or in childhood since I was born in a country with a high HepB infection rate. I am 30 and a former social "binge" drinker- on weekends I would get wasted with my friends! I stopped binging about a year ago, but continued to have a drink or two on a weekly basis. I work in a profession where I attend evens and fundraisers every week and drinking is a big part of my social/p
proffesional culture. But I am committed to stop completly.
My new doctor immediately had me do a liver ultrasound, and I was found to have "fatty liver". SHe then had me undergo a biopsy just in case i needed drug therapy. The biopsy showed that there is some inflamation but no scarring. So even though my viral load is at around 5K copies, she beleives my viral load fluctuates.
She prescribes Baraclude- with I will pay $250 co-pay for a 3 month supply!
Is there any likelihood that the drug will iradicate the HepB? I've heard that is possble.
You can control those 'little bacteria thangs' thru dietary measures to some point.
Red meat and dairy products create ammonia in the gut--as do certain veggies, grains, fats, vit/minerals etc.
That ammonia build up and following hepatic encephalopathy is no joke and for the patient --you can't tell.
I have to depend on others to notice my gradual withdrawal, lack of fine detail attention and 'forgetfulness' and emotional swings.
the best prevention, before medical intervention , is diet and exercise and emotional well being.
I personally think encephalopathy is one of the most serious sx's of hep c, and undetected and un-dx'd, the most destructive--in terms of family, jobs, friends and personal happiness/spiritual peace.
And thanks for a usa name-kristalose-and source-walgreens-for the lac- that works absolute wonders.
I go to Amsterdam-for the art and flowers and hash-every year and end up 'smuggling' lac back!!
As w/ so many things, you can treat, eat and walk--all w/the purpose of reducing toxins and liver distress=w/o lotsa $$'s and some common sense!
to all with high amonia levels please eat right and take lactolouse make sure youu are getting your cholestoral checked .My dad just had a massive heart attack his amonia was 210 each organ attempted to shut down 1 by1 he lost his mind for 24 hours thank god he is still alive.Any swelling in the lower extrimidies go to seek help asap and if they find nothing MAKE SURE YOU GET YOUR CHOLESTORAL CHECKED BEFORE YOU LEAVE THE STRESS TEST THAT THEY WILL GIVE YOU CAN AND WILL LIE. GOD BLESS EACH OF YOU AND YOUR FAMILIES....AND IF YOUR LIVER IS BAD AND YOU WANT TO LIVE STOP STOP SMOKING DIPPING ETC.THIS IS REAL I AM 34 YEARS OLD AND ALMOST LOST MY DADDY LOVE YOURSELF AND YOURSELF WILL LOVE YOU. LILLY POOH.